Taking Control of Hepatitis C

Transcription

1 2014 Taking Control of Hepatitis C

2 Taking Control of Hepatitis C You have just been told you are infected with the hepatitis C virus (HCV) and you probably have a lot of questions. You may wonder what HCV means to you, your family, and your future. You may be confused and even scared. It is important to know that you are not alone. There are over 3,000 Nova Scotians known to have HCV, but there are many more that are still not aware they have the HCV infection. You have the support of many health care providers. There are effective treatments that may be right for you. This booklet will give you more information about HCV, and what you need to do to keep your body healthy. We have highlighted some medical terms in the text, and defined them near the end of this booklet. This will help you understand commonly used key medical terms. Information is key to helping you take control of HCV. What is HCV? HCV is the most common chronic viral infection in Canada. In the past, HCV was often called non-a, non-b hepatitis. The HCV virus was identified in In 1990, a HCV antibody test (anti-hcv) became available to identify individuals exposed to HCV. There is still no vaccine to prevent HCV. Progression of HCV Over time, for every 100 people infected with HCV: will develop chronic infection will develop chronic liver disease 5-20 will develop cirrhosis 1-5 will die of cirrhosis or liver cancer Source: CDC (Centers for Disease Control & Prevention) 1

3 Can I be treated? Yes, there are treatments for HCV although these treatments are not right for everyone. Only you and a member of your health care team together can decide if a certain treatment is right for you. What causes HCV? HCV is transmitted (passed to another person) through direct exposure to HCV-infected blood if there is an opening in the skin or mucous membrane. Transmission rarely happens from exposure to other infected body fluids, such as semen. The HCV virus infects the liver causing inflammation (swelling) that damages the liver tissue. Who is at risk for getting HCV? People who may come in contact with infected blood, instruments, or needles, such as injection drug users, health care workers, or public safety workers (for example, fire fighters, police officers, and paramedics) are at risk of getting HCV. Other potential risks include snorting cocaine, tattooing, and body piercing. If you are in a long-term, monogamous relationship with a partner who has HCV, your risk of getting HCV is thought to be low. For these monogamous couples, the Centers for Disease Control and Prevention (CDC) does not recommend using condoms to prevent transmission. But couples should avoid sharing razors, toothbrushes, and nail clippers. The risk of transmission is higher if you have multiple short-term sexual relationships with partners who have HCV. Your risk of getting HCV goes up significantly if you have HIV. Under these circumstances, the CDC recommends regular condom use to lessen your risk of transmission. About 250,000 Canadians have been infected with HCV. It is estimated that up to 85% of people infected with HCV will develop a chronic infection. As many as 21% of the people infected do not know they have the virus. 2

4 What can I do to stop the spread of HCV? Once you know that you have HCV, it is important not to spread the virus. If you use common sense and educate your loved ones with the facts about HCV, you and they can live risk-free. Important facts to remember: The risk of spreading HCV through normal household contact is very low. Oral transmission of HCV has not been proven, so you can hug and kiss your family and friends. People living with an HCV infected individual should not share personal care items, such as razors, toothbrushes, and nail clippers. This lowers the risk of others being exposed to infected blood. There is a low risk that HCV can be transmitted through sex. There is an increased risk of many types of infections if you have multiple sexual partners. Tell your partner about your infection. If you are sexually active with multiple partners, you should always use a condom. There is a very low risk of the infection in long-term partners of people with chronic HCV if they have no other risk factor for infection. Menstrual blood is known to carry HCV. Women should not have sex while they have their period. Women with HCV do not need to avoid pregnancy or breastfeeding. The risk of passing the virus to your baby during childbirth is about 5%. Children of mothers with HCV should be tested at least 1 year after birth. HCV positive mothers should not breastfeed if their nipples are cracked or bleeding. 3

5 Your liver and HCV Where is my liver? Your liver is the largest internal organ in your body. It is located in the upper right section of the abdomen, just under the rib cage. What does my liver do? Your liver is a complex chemical factory that works 24 hours a day. Most of the blood returning to your heart from your intestinal tract passes through your liver. This means everything absorbed into your bloodstream from the food you eat passes through your liver. Your liver is a complex organ that is essential to life. You simply cannot live without it. Liver Your liver helps you by: Clearing alcohol, drugs, harmful byproducts, and other toxins from your blood. Converting (changing) most medicines into a form your body can use. Making essential proteins that: Carry nutrients and other substances throughout your body. Clot blood. Provide resistance to infection and bacteria. Maintaining a healthy balance in your body of: Hormones. Cholesterol your liver makes it, excretes it, and converts it. Essential vitamins and minerals which your liver processes. Glucose your liver makes, stores, and supplies glucose (a sugar) to the rest of your body. Fat your liver makes and stores fat for your body. 4

6 What are the symptoms of HCV? You can live with HCV for many years without having any major symptoms, or you might have a small loss of energy. When this happens, fatigue, fever, nausea, poor appetite, or muscle and joint pain may happen. Symptoms can vary and can come and go over time. Whether you have no symptoms or many does not have anything to do with the amount of liver damage you have. What are the symptoms of advanced liver disease due to HCV? In the first few decades of infection, your liver-related symptoms are not present. When your liver changes more than 75%, you may have jaundice (yellow skin and eyes), ascites (fluid buildup in the abdomen), encephalopathy (severe confusion and coma due to buildup of toxins) and hemorrhage (heavy bleeding) from veins in the esophagus (throat area). How does HCV affect the liver? The HCV infects your liver cells. This causes your liver cells to become inflamed. Over time, chronic long-term inflammation can cause liver cell damage and result in fibrosis (liver scarring), or even cirrhosis (advanced liver scarring). Chronic HCV appears to be a slowly progressive disease that may gradually advance over years. About 20% of people with chronic HCV develop cirrhosis within 20 years. The misuse of drugs and alcohol affect how fast the inflammation changes into fibrosis or cirrhosis. HCV is associated with an increased chance of developing hepatocellular carcinoma, a type of primary liver cancer. Almost all HCV-related liver cancer happens in patients with cirrhosis of the liver. Healthy eating, maintaining/achieving a normal weight, getting proper rest, avoiding alcohol and recreational drugs, as well as a responsible approach to treatment can make a large difference in managing HCV. 5

7 How to prepare for your clinic appointments Because appointments can be short and there is often a lot of ground to cover, it s a good idea to be prepared. To prepare, try to: Write down any symptoms you are experiencing, including any that may seem unrelated to the reason for your appointment. Write down key personal information, including any major stresses or recent life changes (marriage, divorce, death of a family member, new job, etc.) Make a list of all medications, vitamins, or supplements you re taking. Consider taking a family member or friend along. Sometimes it can be hard to remember all the information given during an appointment. Someone who goes with you may remember something that you missed or forgot. How is HCV diagnosed? A diagnosis is made through a blood test. The blood test looks for the antibodies to the virus. If this is positive, a second test is done to see if the virus is present in the blood. Here is a table of the tests commonly used to diagnose HCV and monitor liver function. Test HCV antibody (Anti-HCV) (blood test) Alanine Aminotransferase (ALT) (blood test) HCV RNA (HCV RNA) or Polymerase Chain Reaction (PCR) (blood test) HCV RNA Viral Load (blood test) HCV RIBA Antibody Test Definition Your body makes HCV virus antibodies to fight the HCV virus. They stay in your system for life. This test measures whether there are HCV virus antibodies in your blood (screening test). When liver cells are injured or destroyed, enzymes escape into your blood. This test measures the level of the enzyme ALT in your blood and tells whether there is inflammation. Tests whether or not there is HCV virus in your blood (confirmatory test). This test measures the number of HCV virus particles in your blood. A laboratory test to confirm the antibodies of HCV in the blood. 6

8 Test Genotyping (blood test) Ultrasound (imaging test) Fibroscan Definition There are different genetic strains of HCV. It is very helpful to know the genotype of your virus because different types need different lengths of treatment. Sounds waves are used to create a picture of your liver. It shows the size and texture of your liver, and the size of bile ducts and blood vessels. It is a safe and painless way to investigate (check on) your liver and its blood supply. Similar to an ultrasound, a Fibroscan, or Transient Elastography sends a wave into the liver by an ultrasound transducer on an ultrasound probe. The wave velocity passing through the liver can be measured and converted into liver stiffness to help measure the amount of liver fibrosis. How is HCV treated? Before thinking about treatment, it is important to remember that no treatment will work for every single person. There is hope, but treatment for HCV is a big decision. It is a large commitment on your part as well as your family with a lot of expense. Talk with your health care provider. Make sure you fully understand the goals of your treatment. Getting treatment for HCV may depend on many factors, including: The amount of damage to your liver. Any other health conditions you have. How much HCV virus you have. Most people with acute HCV do not receive treatment because they do not know that they have the virus. If you believe you have come in contact with the HCV virus, talk to your health care provider to get tested. Acute HCV can be found early, and can be possibly treated with medicine to help prevent chronic HCV. People with chronic HCV may also not know they have the virus because they do not show symptoms. If a blood test or liver biopsy shows that you do have chronic HCV, but there is no damage to your liver, then you may not need treatment. If you have some liver damage, medicines can be used to help fight the viral infection. Treatments are changing quickly; therefore talk about treatment options with your health care professional often. 7

9 Treatment options and genotype Chronic HCV has 6 different genotype strands (types). The strand of genotype of chronic HCV you have may determine your treatment options. It is important for your health care professional to know the strand of genotype of chronic HCV you have before making any big recommendations. 6 different genotype strands: Genotype 1a Genotype 1b Genotype 2a, 2b, 2c, & 2d Genotype 3a, 3b, 3c, 3d, & 3f Genotype 4a, 4b, 4c, 4d, 4e, 4f, 4g, 4h, 4i, & 4j Genotype 5a Genotype 6a What treatments have been approved for HCV in Canada? Pegetron Combination of pegylated interferon alfa 2B injections and ribavirin pills. Pegasys RBV Combination of pegylated interferon alfa 2A injections and ribavirin pills. Pegetron Combination of pegylated interferon alfa 2B injections and ribavirin pills plus Incivek or Victrellis, or Sovaldi or Galexos. Pegasys RBV Combination of pegylated interferon alfa 2A injections and ribavirin pills plus Incivek or Victrellis, or Sovaldi or Galexos. Galexos and Sovaldi - all oral therapy. Sovaldi and ribavirin - all oral therapy. There are a number of treatments for HCV and they are changing quickly. Your liver care team will give you available options based on a number of factors: Genotype Degree of liver scarring Previous response to HCV treatment Insurance coverage 8

10 How can treatment help me? HCV treatments can remove (or clear) the HCV virus from your blood. With the latest treatments, this happens in over 70% of those treated. The treatment can stop the virus from damaging the liver and decrease the risk of spreading the virus. What will make the treatment more likely to work? Some things can affect how well the treatment works. They are: Viral genotype: Genotypes 2 and 3 respond better to treatment than others. Viral load: This is the amount of virus in your blood. If you have lower levels of virus in your blood when you start treatment, you may have a better chance of getting rid of the virus. Gender: The treatment for HCV appears to work better in women than men. Scarring in the liver: You may have a better chance of clearing the virus from your body if you have minimal or no scarring in the liver. Taking your medicine: Taking all your pills and/or injections as prescribed and on time is essential. Avoid alcohol and use safer injection practices during treatment. Do I have to have a test to see the amount of scarring in my liver before starting treatment? You may be asked to have a Fibroscan before you start treatment. A Fibroscan is similar to an ultrasound and it tells how much damage there is in your liver and can help you decide when to start treatment. If I want to start treatment, what should I do next? Speak with a member of your health care team if you want to start treatment for HCV. It is a good idea to talk about any concerns you have before you start treatment. Your health care provider and you will decide if treatment is right for you. Together, we will also check your insurance coverage for medicine costs. 9

11 What should I know about my treatment? You may have side effects. Most patients on HCV treatment have side effects, such as fatigue and flu-like symptoms (mainly experienced when the treatment includes interferon. Some side effects go away and some of them last for the whole time you are treated (see the following pages). You will have several lab tests while you are on the medicines to monitor for side effects to make sure that the medicines are safe and working for you. You need to be available for follow-up visits on a regular basis by your health care provider. This will help in managing side effects. You or your partner cannot become pregnant while taking the medication ribavirin.ribavirin can cause serious birth defects. If you are taking ribavirin, you must use 2 forms of birth control, one for you, and one for your partner. An example is a condom for the man, and a diaphragm or birth control pill for the woman. You must keep using this type of birth control the whole time you are on combination treatment and for 6 months after your last dose. What else do I need to know about treatment? The treatment for HCV is expensive. Many insurance companies cover the medicines. If you are on provincial social assistance, some of the medicines are also covered. If you need help with the medicine costs, please let your health care provider know. Can I work during the treatment? While for most patients work is not a problem, some can t work during the treatment. Before starting treatment, it is important to check with your place of work and review your sick benefits and long-term disability program. Will I have to take other medicines to help with my side effects? You may not need any other medicines to help with your side effects. If you have too many side effects, or they cause problems for you, a member of your health care team may prescribe some extra medicines. These may include medicines to help you minimize flu-like symptoms, sleep better, or to control skin itching caused by treatment. Speak with a member of your health care team to learn more about managing side effects. 10

12 What are some of the side effects of HCV treatment? Most people who are on treatment for HCV have side effects. These side effects can be from mild to severe. Each person on treatment responds differently. There is no way of knowing which side effects you might have. If you have side effects from your HCV treatment, you should tell a member of your health care team. If you think you might forget all the side effects you are having, write them down to tell your health care provider at your next appointment. A member of your health care team needs to know as much as possible about your side effects to help your treatment work better. Side effects of HCV treatment with interferon may include: Feeling tired Fever and chills Nausea or vomiting Loss of appetite Feeling anxious, irritable, depressed, or moody Headaches and muscle aches Hair loss Not being able to sleep Problems with diabetes Side effects of HCV treatment with non interferon medications may include: Dry, itchy, irritated skin or a rash Shortness of breath Chest pain Sun-sensitivity 11

13 How can I reduce the side effects of my HCV treatment? Side effects might go away by themselves or become less uncomfortable over time. In the meantime, here are some ways to handle side effects: Drink plenty of clear liquids. Try to drink between 8-10 glasses of water or another clear liquid every day. Drink more if you are vomiting. Do not drink beverages that have alcohol, caffeine (such as coffee, cola, and strong tea), or a lot of sugar (such as soft drinks). Try to get plenty of sleep at night. Take short naps during the day. Eat small, healthy meals. Crackers, dry toast, or ginger ale can help settle your stomach. Try to eat healthy meals even if you are not very hungry. Exercise regularly but lightly. Walking and lifting light weights are good choices. Take any pain relievers that your health care provider suggests. Try taking your medicine before you go to bed, so that you can sleep through the side effects. Taking a pain reliever about 30 minutes before your interferon injection can help make the side effects less severe. Try to use simple, unscented lotions to help dry and itchy skin. If I had problems in the past with depression, how can I avoid it during treatment for HCV? Tell a member of your health care team if you have been depressed in the past. Involve your family in assessing (monitoring) your mood. Consider counselling and support groups. Tiredness may add to or increase the symptoms of depression. 12

14 What should I do if I feel irritable, anxious, depressed, or moody from my treatment? Try to remember that these are only the side effects of your treatment. They should go away. If you need help dealing with them, please tell your health care provider. Talk about your feelings with a family member, friend, or someone else you trust. Tell people close to you when you are taking your treatment. Tell them that it can affect your moods. Join a support group to learn from others who have been through this. Avoid things that can make you feel stressed, like too much caffeine, sugar, or nicotine. Learn ways to relax. Meditate or breathe quietly. Go for a walk or do some other light exercise. If you are taking medicine because you are depressed, be sure not to skip a dose or stop the medication. Keep all of your appointments with your psychiatrist or therapist. If your mood swings or depression gets very severe, or if you ever think about suicide, call your family doctor, psychiatrist, therapist, or health care team right away. What lifestyle changes should I make? Maintaining a healthy lifestyle, normal weight, eating a well-balanced diet, and avoiding alcohol will help. Getting enough rest and moderate exercise can also lead to a feeling of well-being. Alcohol and your liver When you have alcohol, it is absorbed directly into your bloodstream through your stomach and small intestine. When alcohol absorbs into your bloodstream, it can move quickly throughout your body where it affects the function of each cell that it enters. Your liver is the only organ that is used to detoxify (get rid of) alcohol. When there is too much alcohol for your liver to handle at one time, the normal functions of your liver are stopped, which can lead to a chemical imbalance in your body. If your liver is continually being used for detoxification of alcohol, then that can lead to liver cells becoming changed or destroyed, which can cause fat deposits, inflammation, or permanent scarring. 13

15 What is a healthy, well-balanced diet? To eat a healthy diet means choosing a variety of foods from the 4 food groups according to Canada s Food Guide to Healthy Eating. Grain products (6-8 servings each day) (for example, bread, cold or hot cereal, pasta, rice). Vegetables and fruit (7-10 servings each day) (for example, apples, carrots, cranberry juice, V-8 juice, salad). Milk products (2-4 servings each day) (for example, milk, yogurt, cheese). Meat and alternatives (2-3 servings each day) (for example, beef, poultry, fish, eggs, beans, peanut butter). You do not need to change your diet all at once. Small changes can make a healthy difference. Here are some simple ways that you can make healthier choices to help you feel your best: Ask for 1% or skim milk instead of cream in your coffee or tea. Look for a healthy sections menu when at a fast food restaurant. Snack on baked chips or pretzels instead of regular chips or cheese puffs. Drink diet soft drinks instead of regular. Choose non-hydrogenated margarines such as Becel instead of butter. Choose lower sodium products when available (such as soups, sauces, and crackers). Leave canned veggies on the shelf and buy frozen instead. Pick lean or extra-lean meats instead of regular cuts (look for white parts less white on the meat means less fat). Look for words like grilled and baked instead of fried and breaded when eating at restaurants. Try to eat fish at least 2 times per week. Try to get at least 30 minutes of activity per day. 14

16 What about herbal remedies? Generally, there is little scientific proof to support claims about herbal medicines. Alternative medicines are not well controlled, so proof of safety, possible side effects, exact ingredients, potency, purity, directions for use, and the effectiveness of the herb may be difficult to determine. Some herbs and high doses of some vitamins, which are toxic to your liver, may cause serious problems to your liver and your general health if not taken properly. It is very important that you tell your health care provider about any herbal remedy you are thinking of taking. Some words your health care team may use: Acute hepatitis C: This is an inflammation of the liver caused by HCV. It can start suddenly or gradually, and rarely lasts longer than 1 or 2 months. Usually, there is little immediate damage to the liver. In rare cases, acute hepatitis C can cause severe, even life-threatening liver damage but often there are no symptoms. Antibodies: These proteins are made by our bodies as a natural defense to infections. They attach to the virus and try to destroy it. Chronic hepatitis C: Patients with chronic HCV have the disease for life if it is left untreated. Over a period of time, inflammation continues. Stage 1 inflammation: Very little inflammation and no liver function damage. The HCV virus invades the liver cells and infects them. Stage 2 fibrosis: The infected liver cells get inflamed. Liver cells die and turn into scar tissue. Stage 3 bridging fibrosis: Among the healthy and inflamed liver, cell strands of scar tissue form. Stage 4 cirrhosis: Damage of the liver with a lot of liver cell destruction. Cell damage causes scar tissue in the liver (fibrosis), leading to cirrhosis. In such cases, liver function is lowered. This can lead to liver failure. Cirrhosis: A type of permanent and progressive liver damage. Usually, the liver will try to regenerate (grow back) itself. Any chronic liver disease can lead to scarring. Once present, cirrhosis is permanent, but its progress can be stopped. Fibroscan : A safe and painless way to find out the stage of fibrosis in the liver by measuring the liver s stiffness with an ultrasound. Fibrosis: Scar tissue that is made after an infection or injury. It can happen in the liver because of long-term inflammation. Genotype: Classification of a virus based on the specific genetic strands of the virus. 15

17 Glucose: A simple sugar, which your cells need for energy. Glucose passes directly into the bloodstream from the small intestine and is stored in the liver as glycogen. Infection: An invasion of body tissues by germs (such as viruses and bacteria). Inflammation: A reaction of your body (such as heat, swelling, redness, or pain) to injury or disease. Inflammation may result from physical damage, infection, or surgery. Liver biopsy: A small piece of tissue is taken out and looked at under a microscope to measure the effects of a disease. A special needle is passed through the skin into the liver to take out a very small piece of tissue. Liver enzymes: A chemical substance made up of protein, which is made by living cells such as ALT (SGPT) and AST (SGOT). Enzymes change the rate of chemical reactions in other substances. Platelets: Disk-shaped structures that float in the blood plasma or fluid and are key to the clotting process. Virus: A type of germ that may cause an infection. It is made of genetic material wrapped up in a protein coat. Online resources

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19 Looking for more health information? Contact your local public library for books, videos, magazines, and other resources. For more information go to Capital Health promotes a smoke-free, vape-free, and scent-free environment. Please do not use perfumed products. Thank you! Capital Health, Nova Scotia Prepared by: Geri Hirsch RN, MSN and K. Watt MD, FRCPC, Hepatology Reviewed by: Carla Burgess RN, MN and K. Peltekian MD, FRCPC Revised by: Timothy Mombourquette, GI research student Illustrations by: LifeART Super Anatomy 1 Images, Copyright 1994, TechPool Studios Corp. USA Designed by: Capital Health Library Services, Patient Education Team Printed by: Dalhousie University Print Centre The information in this brochure is provided for informational and educational purposes only. The information is not intended to be and does not constitute healthcare or medical advice. If you have any questions, please ask your healthcare provider. WC Revised December 2014 The information in this pamphlet is to be updated every 3 years.